ShaesMom

My dd has been doing this for the last three years. She doesn't even try to make it the bathroom. She has always told us she doesn't need to go and/or doesn't feel it. We are thinking the PANDAS started 1 1/2 years ago but looking through her history she actually had her first strep infection about six months prior to her starting the pooping issues. So, maybe this was the first symptom and we just never caught it. She never had bathroom problems before then. We will have her sit on the pot and she will go pee says she has tried and get up. Five to ten minutes later we will smell it in her pants (just a little bit will be there). She'll go sit on the toilet again and nothing will happen and then an hour later she will have dirty underwear again. This can happen up to four times a day. It is very frusterating. She doesn't even seem to care that her pants are dirty. We have been to the GI and had tests run. The answer we get is that it is a behavior thing and we just need to get her to sit on the toilet after each meal etc... Like we haven't tried! We have also upped her fiber intake but haven't seen much in way of results. She was on Miralax for a long time--big mistake that stuff is poison and has never been tested on children. I asked her about it again yesterday after reading your post and she said that her brain doesn't tell her when it is time to go. Maybe it is all related. I do know she has periods where she can go weeks without any problems. Of course this often occurs during the summer or holidays. So, is it because she is not at school or because she isn't around sick kids? Weekends are still a problem during the school year so maybe it is the PANDAS. Very interesting thought. Sam

Shae has stopped complaining about any problems with her eyes since she has started the proph. abx. So, I've put it on the backburner right now since we are already at the dr at least once a week. Sam

Amy, She had several urine quick dips that all came back showing white blood cells. It seemed to be a red flag for the Rheumy. All of her blood work came back showing normal kidney function so the glomerulonephritis has been ruled out for now. I assume you know that glomerulonephritis is also caused by strep? She has an EKG & Echo scheduled for this Friday. From your reply I can't tell if your dd had an abnormal Echo?? Was she dx with Carditis (also caused by strep) or Rheumatic Fever? What is a spect scan?? Great to hear that she is able to get by without taking all kinds of supplements. We are thinking of doing IVIG this summer. I would love to hear more about how it has worked for your dd. Sam

My dd has an anaphylatic allergy to dairy so the Kefir is out. I am not familiar with the S. Boulardii--do you know if it is also a dairy product? Sam

How does everyone deal with the raging episodes? My dd has gone from severe separation anxiety to daily raging episodes. It is taking its toll on everyone in the family. Sadly, I have a difficult time being around her sometimes. I think it would be easier if she was bent over the toilet puking all day. It is really hard to remember that she is sick when she is screaming at you every day. We don't want this behavior to become a habit when she is feeling better. Do we pick her up and hug her until she is done, do we try to ignore her until she calms down? The constant drama and turmoil is so overwhelming. Please share your coping strategies.

Kathy, I have probably cried just as many tears as you have! Last night was so horrible that my 9 year old son felt he had to come check on me! LOL Somedays I feel like all I want to do is curl in a ball and just let it all out. I have been at the bank, grocery store and church when we emotions have taken over. this whole thing is so overwhelming but we can get through it. Good luck girl! Sam

Kathy, I can't give you much advice but hopefully some encouragement. No "official" dx of PANDAS but my dd started Pen VK three days ago and I've seen her symptoms get worse over the course of the last three days. I'm gonna give it a week and then see about getting her abx changed. We are also at the beginning of this journey; saw a Ped. Rheum. on tuesday who at least believes that PANDAS does exist but does not seem like he will be quick to give the dx. We are waiting on a EKG & Echo next Friday and then an MRI on June 5th. It is terribly hard to watch your "baby" battle something that no one seems to have control of. Keep your faith, your hope up, and your courage strong. You are on the right road to getting him better but it may take some time and trial and error. Remember that you are not alone on this journey. Please email or call anytime even if it just to cry. 402-435-9247 CT Sam

T.Mom, OUr dd just started PenVK 2 days ago. Her separation anxiety has been down since she finished a 10 day round of amoxicillin but I've noticed in the last week that her raging is getting worse. Yesterday I heard her say "mommy doesn't like me" when I went to her room to get her pj's and I believe the day before that she said "mommy is mean" because I told her she had to wait until after dinner for a snack. We don't allow that kind of talk in our home (she ia almost 7) and I'm concerned what other thoughts are now in her head. Have you done IVIG or are you managing her care with abx? Do you try other abx before the amoxicillin? Sam

How do you know when they are "yeasty"?

One more question....will giving her Ibuprofen daily until the MRI likely decrease any inflammation that may be there? It really seems to help her.

Hi. The visit with the Rheum. went better than expected. He is a young guy who fortunately for us saw a "true Pandas" case when he was in med school. He did state that it does exist and is a real disease through rare. So, it sounds like we are off to a much better start than most of you have encountered. He ruled out arthritis, wouldn't say much about RF, thinks it may be glomerulonephritis, did find a heart murmur that wasn't there before, and said that some of her symptoms are consist with Pandas. He is rechecking her ASO & Dbnase (?) We are going back for a EKG, Echo, and MRI. What ever he saw in her history was enough for him to give her abx for a year without our asking (great but scary!). The RX is for Pen Vk 250mg twice daily. I didn't get the impression that he would be quick to say yes she has Pandas, sounded like he wanted to see what the MRI showed first. So, my question for those who you who have already been through this is...What do we need to know/watch for/anticipate now that she is on abx for the next year? Probotics? Yeast infections? Constipation? Can she still have Pandas episodes? Also, from the small amount of research I've done I've been led to believe that MRI's can often miss Pandas? Have your kiddos had MRI's and what were the results? Sam

Several of you have said you your child is receiving EIP -- What is EIP??? Sam

Michele, That sounds like a great idea. You should post it under a separate heading. Sam Isn't there some sort of research fund we could have for PANDAS? I wonder if Dr. Leckman/Diana could help organize this? I know he is trying to get a grant to research in the next few years. We really need to spread the word and give more recognition to the disorder. Start an organization, do walks for the research funds. Anyone interested? Michele [

Thanks everyone for the support! I'll definitely pass along the article. Sam

Lorie, My dd has been complaining that it feels like she has something in her one eye. She comments about it daily and can tell me the exact day that it started. Friday she started complaining that her vision was blurry in that same eye. We plan on making an appt with an Opth. next week. We haven't received an official diagnose of PANDAS but I have contacted Dr. K who stated that it was "VERY likely" and Diana Pohlman felt that it was definitely PANDAS. Sam

I asked my dd 1st grade teacher to keep a journal for two weeks that I could take with me to the Rheum. It came home today in an envelope addressed "To the Dr's of..." with the date written over the licked seal. I assume this was meant so I wouldn't open it. Anyway, after reading her notes it is quite clear that she believes my dd's separation anxiety is clearly a reflection of me and how I have reacted to the ordeal. My dd was a model student prior to Feb and the teacher was actually a friend. I have done nothing but insist that my dd attend school every morning--almost to the point where I think I might be to hard on her. I explained at a meeting with the school psy. and her teacher that her behavior was due to the inflammation in her brain but clearly they still believe that it is strictly a behavioral problem. this frustrates me to no end! There were a few days where her anxiety level was an 8-10 the entire day of school. Why would someone not call me to come and get her if she was struggling so much. Last week the school actually asked me not to attend a field trip with her class because they were concerned that she was going to disrupt the rest of the class when I left. Needless to say her teacher was not very happy when I informed her that I would indeed be going on the field trip and taking me daughter home with afterwards. In fact, she said she would pass along my decision to the principal. Since when does a principal need to know a parent is going on a field trip?? Sorry, I just need to rant & rave! Thanks!! Sam

If you go to the vegweb.com website you can find a lot of recipes for cheese sauce. I have one for "Queso Dip" that is made using nutritional yeast and can be used as a sauce for casseroles. Sam

Pedia-Lax has a new Fiber Gummie. I know you can find it at Walgreens. My dd also takes the Plumsmart and eats the new bread by EarthGrains that has Double Fiber. The bread has seemed really helpful. Sam

haven't made that appt yet--she just started complaining of blurry vision today.

Have any of your children experienced vision problems with the PANDAS? My 6 yr old dd can tell me the exact day (before Easter) that she started feeling like she had something stuck in her eye and is now complaining that her vision is blurry in that same eye. Sam

Good luck Kathy. My house has been like a constant roller coaster ride because of the constant mood changes my dd has. The stress is overwhelming. I have visited with the nurse of the ped. Rheum. we are going to see next week and mentioned PANDAS to her and from her response I have the impression that the dr is not really receptive to the idea.

Shae was put on Omnicef in November of '07. She has a history of chronic UTI's due to impacted bowels. this goes back probably to the fall of 2006. Because of her history, we always test for UTI's. She never complains of usual UTI symptoms (burning, urine frequency, etc)> When I notice a change in her behavior I take her to the dr's office and we always do a urine test which shows traces in the office but comes back clean when they send it off to the lab. She is always put on Septra due to the trace and then I keep her on for the full course because I know her symptoms always seem to improve. She has always complained of her throat feeling weird but never has a fever or other symptoms consist with strep. Our family has a long history of strep once my older son started school. Shae has had it several times before 11/07. We switched dr's in spring '07 and I believe that the other dr always sent the test off to the lab. I don't think my new dr does and I've never thought to insist that they do. We didn't have any idea what we were dealing with until her ASO's came back elevated.

Was a urinalysis or urine culture done when your dd was treated for a UTI? I ask b/c PANDAS kids can present with urinary frequency (acting just like they have a UTI) but urine cultures will be negative. A throat culture (if done) may be positive. From http://www.neurologyreviews.com/apr02/pandas.html “For many of the children, it was an obsessive need to urinate, and they had this elaborate cleaning ritual afterwards. It would seem to peak if they were going to leave the house. These are continent children who had no issues with that before.” A child presenting with complaints of frequent urination might be worked up for a bladder infection or, in the absence of symptoms, urinary frequency. Instead, Dr. Murphy advised, the question that should be asked is whether the throat should be examined and cultured during a visit that doesn’t really seem to be a strep throat visit. I should also warn your that OCD doesn't always present as the classic handwashing. It can be defiance or a child that insists on having things done a certain way. Also, my dd's tics (the last symptom to show up) would be pretty subtle, a throat sound, that wouldn't be obvious to the casual observer. The handwriting decline, separation anxiety, moody, grumpy, stomach aches, not playing (this was a big one when my dd's pandas was severe!), all sound just like PANDAS. Have you seen this website ? http://www.webpediatrics.com/pandas.html several on this forum have had IVIG with Dr. K. He will answer your e-mail (no charge). He also does phone consults (a charge). Shame on your ped for not doing a throat culture when you ask for it. Lots of PANDAS kids have behavior change as their only symptom (no sore throat, no fever) when they get strep.

Hi. I have a 6 year daughter who is has been chronically ill for at least the last year and half. We are visiting a Ped. Rheum. next week to see if she has RF. Her health history is as follows: 11/07 Postitive Strep Test 12/07 back at Dr still complaining of sore throat-nothing done 1/08 Separation Anxiety shortly after returning from xmas break. Anxiety had never been an issue before. 1/08 Back at Dr-Mom complains of changes in her behavior. Put on Septra for UTI. Immediate change in behavior 4/08 Back at Dr-Mom complains of changes in behavior-moody, grumpy & aggressive. Put on Septra again--behavior improves refuses to ride her bike or scooter because it hurts her legs. Doesn't like to walk far. Constantly complains of sore throat but the dr never sees anything to warrant a strep test. 5/08 Brother positive for strep given antiboitic 6/08 Brother back at dr-given amoxicillian 8/5 Back at dr-Mom complaining of behavior changes, sore throat 12/08 Back at dr again-checked for UTI given Septra again - behavior improves xmas 08 Classmate positive for strep 1/09 constant complaints of sore throat and tummy ache. Starts refusing to go to activities. 2/09 Behavior gets worse- anxiety sets in, starts lashing out, doesn't want to be away from, moody, grumpy, lethargic, won't play with brother or friends 3/09 Separation anxiety has increased to a level 10. Panic and fear are evident when it is time to go to school. Physically shaking, seems desperate. won't leave parents side, starts sleeping in our bed, clingy, constantly telling us she loves us. Starts complaining it feels like something is in her eye-daily. Exhaustion is normal even after 11 hours of sleep. Looks pale & sick. Power struggles, starts going through the terrible twos again. 3/09 Back to doctor--they find nothing wrong with her. Mom insisting something is wrong--she always improves for a short period when on antibiotics and then symptoms reappear a few weeks later. Rapid strep test negative-- to my knowledge it was not sent to a lab. Notice handwriting is becoming very sloppy & hard to read. Refuses to play--only sits on the couch. Never wants to leave my side. Will no longer go to the neighbors house. 4/09 Back at dr-insist on blood work. ASO titers are 1,100. Started on amox--behavior improves in 12 hours. Anxiety still exsists but is to a level 1-2. I have never noticed any tics and i don't know a lot about OCD behaviors. I do know I have spent the last 1 1/2 taking her to dr only because her behavior changes set me off thinking something is wrong. She nevers complains of anything other than the constant sore throat but the dr never sees anything. Actually, she also complains of her legs hurting all the time but we just put it off to growing pains (we didn't know any better). I have told me husband this whole time that I believe she has an infection in her body and the antib. make her feel better for awhile. I feel like I may be onto something with the PANDAS but wonder about her lack of tics & OCD behavior. 1) Do any of your children also have RF? 2) Has separation anxiety been a major factor? 3) Does this sound like PANDAS to you? 4) Can anyone give me the name of a Doctor in the Omaha, Nebraska area who believes in PANDAS? 5) What type of specialist should I take her too? I would appreciate any help and advice. My husband and I don't know where to turn to at this point. Sam